Milo's MAGIC Convention Fundraiser

It's time again for the annual MAGIC Convention! This is our chance to connect with other families of children with Russell-Silver Syndrome (RSS) and other growth disorders, as well as learn about new treatments and therapies. We attended our first convention when Milo was 3, and it was nothing short of life-changing. We were able to consult with the world's expert on RSS, hear about new research that could help our sweet boy, meet other RSS kids (and Milo could see that he wasn't alone), meet other siblings of RSS kids (It's tough being the sibling of a special needs kid.), and see older RSS kids who finally gave us a little peace of mind and reassurance that, if we stuck with all the medical chaos early on, many of Milo's RSS-specific medical issues would likely fade away to memory, and he would thrive and flourish alongside his peers. But the most valuable thing that we got from the experience was simply being around other families who "get it" without having to say a word.
When you compliment us on how you would never guess that Milo has problems, we are so grateful. Behind that "normal" is a lot of educating medical professionals, arguing with doctors and demanding counterintuitive treatments, always remembering snacks, formula, medical equipment, clothing layers, sneaking in feedings on the side of the playground so other kids don't see, late nights and sleepless nights researching, compiling charts, so much cleaning, gathering experience from other parents, organizing medical supplies, giving injections through tears, knowing to the exact calorie how much has been fed/consumed that day, multiple, frequent medication adjustments, injections, medical testing, crying, and the list goes on...and on. A big part of helping us achieve that "normal" is MAGIC and the families who make up our MAGIC family. Milo has come SO FAR, from almost losing him several times, to the happy, active boy he is now, thanks to these relationships we've formed.
This year (like many past years), Milo has received several new diagnoses, but also has many issues that are still mysteries to his specialists. He struggles, and we have a difficult time getting his doctors to stop thinking of Milo as just a "sick kid" and to start investigating all the possibilities. The convention helps us confirm or rule out MAGIC-related diagnoses as causes of his various conditions, episodes, and regressions. It will also give us backup, so to speak, for treatments and protocols for both chronic and acute care. And at age 9, Milo is more aware than ever of his uniqueness. His school and his friends are more supportive and inclusive than we could have hoped for, but Milo still grapples with his differences, from all the physical aspects, routines, and medical interventions, to everything he has to miss because of being sick. BUT, Milo is an upbeat kid and tries to look at the positive, for the most part. Like every year, he is excited about the MAGIC Convention!
Of course, there's a lot of expense involved in Milo's medical care, which means that we rely on fundraising for the convention. Your donation helps pay for transportation, gas, lodging, convention costs, meals, and incidentals. We appreciate any help that you are willing to give, whether in monetary form, or sharing this post with family and friends! Thank you for your support!

Donations ()

  • Anonymous 
    • $18 
    • 32 mos
  • Shelly Phillips 
    • $25 
    • 32 mos
  • Marlene and Buck Adams 
    • $25 
    • 32 mos
  • Daniel Beckmann 
    • $50 
    • 32 mos
  • Simone Furtado 
    • $50 
    • 32 mos
See all

Organizer

Jessica Kerley 
Organizer
Laramie, WY
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